Authors: Mary Curran Hackett
Something happens in this room, something unmentionable: here the soul is yanked out of the body; briefly it hangs about in the air, twisting and contorting; then it is sucked away and is gone. It will be beyond him, this room that is not a room but a hole where one leaks out of existence.
âJ. M. Coetzee,
Disgrace
W
hile the ambulance made its way up the avenue, Cathleen pulled out the card Dr. Basu had given her just a few days earlier in his office. She handed it over to her brother.
“Will you please call him, Sean. Can you see if he can meet us at the hospital?”
“I thought you didn't trust the guy?” Sean looked at her confused.
“I am willing to try anything at this point. I don't think Colm can go through this again. I know I can't. I can't even bear the thought of going into another ER today.”
Hospitals still terrified Cathleen and left her feeling cold despite all the modern design attempts to use warm colors and decorate with inoffensive artwork. Of all the hospitals she had been in over the years, she had preferred the Midwest Heart Clinic the most. The white walls, concrete floors, steel sculptures, crosshatched abstract art, and gargantuan tank of cleansing water were all put there to remind patients they weren't home. She appreciated its honesty.
She and Colm had spent an entire day there the year before, moving from one long test to anotherâhemodynamic testing, Q-SART analyses, heart rate variability studies. She waited two hours to meet with one of the best electrophysiologists in the country to go over the results, but he had canceled their consult. Again, she went all that way for no answers. Exhausted by the process and feeling hopeless, she never called to follow up.
Surely, they would have called,
she thought,
if they had found anything at all.
She was certain the hospital was doing something for other people . . . just not her son. As she followed Colm from the ambulance to the emergency room, she realized that all she wanted and maybe all she needed was one person, just one, who could help her and her son.
When the ambulance arrived, Dr. Basu was waiting for them. As Cathleen stepped out of the truck, he could see that her soft face was tense with fear. She was clutching Colm's hand, and he noticed that Colm was unconscious and had a breathing tube down his throat. At that moment, Dr. Basu was inclined to act more like a worried family member than a doctor, but he resisted the urge to rush and he walked in calculated, paced steps toward Cathleen, Colm, and the uniformed man he saw standing next to them.
“You don't have to worry, Ms. Magee. I will take care of Little Dove,” Dr. Basu said when he reached the gurney that the medics were pushing into a curtained room. He patted Cathleen softly on her back. His hands felt warm, steady, and surprisingly strong to her. He was shocked he had made this gesture and that he was unable to resist the compulsion to comfort her.
Cathleen's eyes filled, and without thinking, she folded her body into the doctor's arms. He held her, and for a moment he was surprised by her remarkable about-face, from her anger on Friday to her complete submission today. But then he understood. He knew the feelings well.
Fear makes people angry, and grief never ceases to transform.
Dr. Basu said nothing, and he let Cathleen gradually untangle herself from his embrace. As she pulled away she did not look him in the face, embarrassed by her sudden rush of emotion.
“How did you get here so fast, Dr. Basu? I thought my brother, Sean, just called you in the ambulance?” Cathleen asked the doctor, while pointing to her brother as a way of introducing them both.
“I am on call and was already here. The message service contacted me and let me know you called and were on your way. I just had to come down from the seventh floor. So what happened?”
“We were walking out of church this morning, and he just went down. He was gone at least a good ten minutes; Cathleen says it's never been that long,” Sean told the doctor, while holding out his hand to shake it and introduce himself. “Sean, Cathleen's brother, by the way.”
As the paramedics, nurses, Sean, and Cathleen moved Colm's gurney down the hall and into a room, Dr. Basu walked with them, while trying to get as many details as possible. When they all reached the room, Dr. Basu stopped Cathleen and Sean at the doorway and asked for a moment alone with the nurses to examine the boy.
Cathleen was startled. “You mean, I can't stay?”
“Just for a few minutes, Cathleen. I want to be as thorough as possible, but I'll try not to be too long. We'll come and get you as soon as we're finished. Why don't you both get some coffee or something to eat?”
Cathleen wanted nothing to eat; all she wanted to do was stay with Colm. Sean could sense his sister's urge to start an argument and stepped in between her and the doctor.
“I'll take care of her, Doctor. No worries. We'll be back in a half hour.”
“That should be more than enough time. Thank you, Sean.”
Colm lay on the gurney, hooked up to wires and IVs. Cathleen could hear the slow
blip, blip, blip
of his weak heartbeat. She kissed Colm softly on the cheek, squeezed his freezing hands, and whispered something no one else could hear. She knew, no matter where he was, no matter what realm she had thought he entered into, he could hear her words loud and clear, “I'll be right here waiting.”
After Cathleen and Sean left the room, other doctors, interns, and residents stepped in. Together they discussed scheduling various tests to measure the boy's brain activity. After so much time without oxygen, they had to consider that he might be brain-dead. Although Colm was alive for now, Dr. Basu knew that this was most likely temporary. Decisions had to be made. After the test results came back, he'd most likely have to tell the boy's mother the unthinkable. He was slightly angry with himself for not being more persistent with her the other day, and for not reminding her how serious her son's condition was. He had always had trouble expressing or even realizing the appropriate sense of urgency
. How could I have made the same mistake twice?
he berated himself.
After Dr. Basu examined the boy, he pored over his massive chart, hoping to find something, anything, that he could have possibly missed. And there it was. Dr. Basu found a short letter from a physician at the Midwest Heart Clinic buried under hundreds of other forms and lab reports. The head of the electrophysiology department there had written in his medical consult notes:
Diagnosisâprogressive, degenerative neurological disease. Do not rule out multiple system atrophy (MSA).
Prognosis for MSAâTerminal
.
TreatmentâSymptom maintenance and pain management.
Dr. Basu read through the letter, which detailed how all the tests at the clinic pointed to one thing: Colm's central nervous system and, consequently, multiple other systems were failing. He had an inability to regulate his heart rate and his body temperature, and eventually he would lose control of his muscles, his speech, and his ability to swallow. Dr. Basu read it over and over. There was no known case of this disease in a childâever. Its incidence in the population was so rare it was all but unheard of. It was a disease attributed to old peopleâin their sixties and seventies. Not a child. Not a young lively boy.
Dr. Basu pushed his hands through his hair.
There either has to be a mistake or there has to be another explanation.
A disease like this in a child would be the equivalent of a five-year-old coming down with Alzheimer'sâan impossibility
. But then he thought of any number of aberrations in nature and science. Yes, he told himself, deviations and variations in nature are the rule. All things are possible. The universe itself was thought to be an aberration. He knew this. He looked again at all the tests, and he too concluded what the clinic had. Why hadn't he put all the pieces together himself? Why had he missed all the telltale signs? The boy's central nervous system was imploding. His body failing. If he didn't hit his head falling down during a syncope episode, he'd eventually die of an embolism, pneumonia, heart failure, or malnutrition after his body stopped absorbing nutrients. There was a long list of ways he could goâand it wouldn't be longâten years maxâbefore he finally did.
Why didn't anyone tell this woman? Why didn't anyone call? Who sendsâand receivesâa consult letter like this one without a phone call to the patient?
Damn these massive hospitals,
he thought for a moment. But then he composed himself and remembered how easy it was for papers to get lost, for patients to fall through the cracks. He himself only found the letter now. None of it mattered, he realized, because in the end there was no cure. Nothing anyone, not even a doctor, could do to change it all. The only thing that mattered now was that somehow he had to deliver all this terrible news to the familyâto Cathleen.
As he was looking up more information on the disease on his laptop, a nurse poked his head through a crack in the curtain.
“There is a priest here in the hall who says he knows the family,” the nurse said to Dr. Basu.
“What does he want?”
“He is waiting to speak to Colm's mother and uncle.”
“Very well. I will let them know, thank you.”
When Cathleen and Sean returned to the room, they saw Dr. Basu leaning over the boy's bedsideâgently patting his head.
“Dr. Basu?” Cathleen said, stepping into the room quietly and startling the doctor.
“Oh good, you're back,” Dr. Basu said, smiling at Cathleen and trying to disguise any hint of bad news. “We have more tests, but for now I think he's resting.”
As the lie came out of his mouth, Dr. Basu cursed himself for it. It would be harder now to tell her and for her to believe it. He couldn't explain why, but he wanted Cathleen to like him, to trust him. He usually didn't care much about what his patients thought of him, but Cathleen was not his patient and Colm was unlike any patient he had ever had.
“Do you mind if I have a moment with him?” Cathleen turned and looked at Dr. Basu and Sean.
“Certainly,” Dr. Basu said, backing out of the room.
“I'll be right outside, Cate, if you need me,” Sean assured her.
Cathleen sat down next to Colm and took his hand. Sean and the doctor looked back to see Cathleen slump forward over her son's body as if pressed by the weight of the world.
Dr. Basu slipped the stethoscope into his white lab coat pocket. He whispered to Sean, “Do you have a moment?”
“Sure.”
Dr. Basu's smile disappeared and he seemed grave. “I have a few matters to discuss. I need you to help me explain these things to your sister. When I spoke to her on Friday, I got the feeling she didn't trust me, or any doctor.”
“Well, Doctor, she has her reasons.”
“Yes, she has every reason to doubt us,” Dr. Basu said as he inhaled deeply and thought of the letter from the clinic.
The doctor's solemn expression frightened Sean. “What aren't you telling me and my sister?”
Dr. Basu inhaled deeply again and began to explain to Sean what he thought was wrong with Colm. “I think Colm's problems are not limited to his heart alone. I was on the right track. I explained this a bit to your sister on Friday. But now I have reason to believe your nephew is suffering from a degenerative disease that is attacking his central nervous system, which controls his heart and brain, among other things. Of course, I, and the other doctors whom I have consulted, could be wrong. Illnesses of this nature are never clear-cut. But if it is indeed what I think it is, it will only get worse. Some people call this Shy-Drager. Some people call it MSAâmultiple system atrophy. Most people only live ten years with the disease before dying. It is extremely rare, and even rarer, if not unheard of, in children. And it's incurable. Unless we've made some error, or unless Colm makes some miraculous turnaround, he will die. His brain and heart seem to be warring with each other. It is as if the part of the brain that controls his autonomic functions is attacking, and the heart is responding by shutting down. The result, however, is that he collapses. In short, his body is slowly dying. We can give him medications and we can install a pacemaker to help alleviate some of the symptoms, but I am afraid there is not much hope. If your nephew does wake up, you will need to convince your sister to put the pacemaker in as soon as possible, and he will have a difficult road ahead. You all will.”
Dr. Basu stopped talking. Somewhere in his explanation he knew he had lost Sean, whose face had gone pale.
Sean straightened up and stood tall. He nodded a small thank-you, and they both turned and walked back to the examining room where they stood quietly watching Cathleen smooth Colm's hair over and over. Several silent minutes passed before Sean noticed the doctor staring at his sister. He could see the pain in the doctor's eyes, and to Sean, the doctor seemed afraidâafraid to tell Cathleen what they both knew.
But Sean's impression was wrong. Dr. Basu was not afraid. He feared little. Life had served up his worst possible nightmare already. All he felt was compassion for this woman, this stranger, who had come into his life. He seemed to know, more than anyone in the world, what it was like to be a parent who had to raise a child that was not for his keeping.
“Dr. Basu, you mind if I go in and see Colm and Cate?”
“Please, go on.”
Sean began to walk away, and then Dr. Basu remembered.
“There is someone here waiting for you and Cathleen. A priest from your church stopped by. He told the nurse that he knows the family and would like to talk to your sister. Would that be all right? He is in the waiting area.”
“Oh, sure. It's just my sister's friend, the monsignor.”
“I'll have one of the nurses go get him,” Dr. Basu said.